Living with MRKH syndrome

Hey ladies! I’m new here, but I just had to jump into this conversation. I’m from Canada, and I was actually diagnosed with this syndrome about 11 years ago (back when I was 16). After my period just stopped coming, I went to see a specialist who did a laparoscopy and found out I was born without a vagina and my uterus is really small and underdeveloped—though my ovaries work just fine. He told me that whenever I felt ready to be intimate, I should look into neovaginoplasty surgery to make things possible. So, that’s what I did. I had the procedure done in Vienna, wore a vaginal dilator for a year to make sure everything healed properly, and honestly, thank God, ten years later I haven't had any issues at all. I don't have periods, which on one hand isn't bad—no cramps, no mood swings, no bleeding 🙂. As for my situation, nobody knows about it except my mom, who gives me total support (even though it was harder for her to process than it was for me), and even my current boyfriend, since we've been together quite a while. I feel like I can't talk to anyone else about it, and now that I'm getting older, the reality that I won't be able to have biological children is hitting harder... plus, I'm really worried about how to bring this up to someone I might want to build a life with. If anyone is dealing with these same dilemmas or has advice on how to handle it, please help! 😢
I'm happy to answer any questions you have because, looking back, the surgery itself was such a huge success. Sending love to all you girls—just know you aren't alone!

Ladies, if anyone here has firsthand experience dealing with MRKHS or the surgery—please reach out. Just a desperate mother here. 😢

Hey everyone! 🙂

I could really use some help here!
Has anyone on this forum ever gone abroad for treatment—maybe for consultations, diagnostics, or even surgery—using their Medicare coverage? If you did, could you please let me know the name of the doctor who accompanied you? That is, obviously, if you actually had a doctor traveling along with you. It would mean the world to me! My English isn't exactly top-tier 🙂 and I’ve got some extra health issues to manage, so having a doctor there to back me up is a total necessity.

Thanks in advance!
🙂

I ended up having surgery back when I was just 16, over in Vienna

Hello everyone... even if there aren't a whole lot of us here, at least we exist! I suppose I should introduce myself as someone facing this exact same struggle, or perhaps something very similar... It is just so incredibly difficult to find the words to talk about this—not just here on this forum, but honestly, almost anywhere else in the world. Along with all the physical suffering that comes with it, there is this constant, heavy shadow of shame that follows you around; shame in front of others, shame because of how they might look at you... which is why I haven't breathed a word of this to anyone until now, but finally, that moment has arrived.
I was wondering if someone might be kind enough to recommend a doctor, a specialist who actually understands and deals with cases like mine... I have finally managed to scrape together enough courage to try and move forward and get my life back to some semblance of normal.
Anyway, I truly hope you can understand where I'm coming from, because we are all in this together... You can reach out via private message if you prefer!

mistyraven34, how old are you anyway?

33 years old

Hey,
Could someone tell me here or shoot me a DM regarding who I should actually reach out to, specifically which surgeon performed your procedure?

I’m looking for anyone with some actual experience to weigh in, because frankly, I have no idea which specialist to trust with my treatment at this point.
Thanks a million

Has anyone here ever been diagnosed with testicular feminization syndrome... you know, Morris syndrome? I was also wondering if anyone happens to know whether neovaginoplasty procedures are actually performed anywhere in America... I'd really appreciate any insight you could share!

Which doctor performed your surgery over in Vienna?

Listen, I’m hardly ever on this forum, so if anyone wants to get in touch, just find me on Facebook under the name Ivana Mrkh America...

Can anyone point me toward a doctor who’s actually in practice right now—anywhere in the US—who really knows their stuff when it comes to MRKH?

Any leads would be a total lifesaver!
🙂

Thanks in advance!

mistytrucker7 said:Can anyone recommend a doctor currently practicing anywhere in the US who actually knows their stuff when it comes to this MRKH situation?

It would be a huge help!
🙂

Thanks in advance!

Honestly, we don't really have anyone like that here. My advice? Look toward Canada.

My daughter is 15. Her doctor is currently recommending a laparoscopy to confirm what the MRI showed—MRKH, an atypical form where the kidney has a specific shape. We’re looking at heading to Vienna for follow-up. Aside from that, there aren't any other issues related to MRKH.
However, before that diagnosis, she received a slightly more serious diagnosis that isn't actually connected to MRKH. Since her treatment for that just started working, we’ll probably delay the surgery for a little while...
It was obviously a massive shock, especially since we found out about both diagnoses in such a short window of time. But as time passes, we're trying to accept it and look on the bright side. We're getting there, one tiny step at a time...
My daughter isn't alone!!!
There are girls with this syndrome right here in the States too. I'm really interested in hearing about your experiences. It feels a lot easier knowing there are others out there 🙂.
Did you undergo a laparoscopy, or was the MRI enough (like they do abroad)? Did you have karyotyping or endocrine testing done? Also, is there a specialist in the US who focuses on patients with MRKH? Her doctors are wonderful—both her local GP and the specialists at the hospital. They've been incredibly kind and professional, and they pinpointed the cause of her amenorrhea so quickly. There wasn't much guesswork involved, but since this syndrome isn't common, maybe someone else here has more experience...
If anyone feels uncomfortable posting here, you can reach me via email: mrkh.bih@gmail.com

We've watched all the videos online and read stories from other girls. There are support groups, they even get tattoos; they're MRKH warriors who realize a diagnosis isn't the end of the world. Most choose adoption or use surrogacy in states where that's an option. Then there are those who simply don't want children and choose to share their love with someone close to them, finding other joys in life. Of course, having a partner matters, but people don't bond just to have kids; they bond because they love each other. You accept what you're given and move forward. If people can't accept it, then they aren't worth it anyway...